European Phenylketonuria – PKU Guidelines

The European Guidelines for Phenylketonuria is one of the latest projects funded by E.S.PKU. The project was started after the publication of the consensus paper, written by delegates of E.S.PKU, showing the needs and wishes for guidelines. Under the lead of Professor Francjan J. van Spronsen and E.S.PKU SAC (scientific advisory committee) those independent PKU guidelines have been developed, with the help of about 20 professionals, experts in PKU, over the past three years. At the annual E.S.PKU conference 2015 in Berlin, Germany- excerpts from these guidelines were presented to the professionals as well as parents/patients.

One of the main aims of the Guidelines is that they are well received by professionals within Europe. Therefore those have to be published within a medical journal first. This is exactly what is planned for the year 2016. As soon as the guidelines are published more information can be made available. There will be more understandable versions of the guidelines for patients and relatives as well.

In the meantime a short video of an interview with Professor Spronsen should answer some of your questions.

If you want to find out more about the PKU guidelines you can visit our dedicated section on our website. You may also want to check the abstracts of presentations that have been held at the E.S.PKU Conference 2015. Of course E.S.PKU welcomes any other questions that you might have. Please use our contact form to get in touch with us.